Sticky Blood-Hughes Syndrome Support
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IV cyclo and Rituixmab

My main drs have in the past told me I have vasculitis and lupus and back in 2009 I had IV cyclo then in Jan 2010 Rituximab. When they started the Rituximab they sent a research dr to see me and he tested me for anti beta 2 glyco protein (had already been tested for anti cardiolipin which was negative). Since then I have had another 2 rounds of Rituximab and it is planned to have this annually for maintenance.

I was then told I have APS, my last appointment they told me they are treating me as APS as my primary issue.

My question is who has been treated with IV cyclo and Rituixmab for this?

Thank you


2 Replies

Hi Louise

I have had 3 cycles of Rituximab and am due my fourth in the summer with annual infusions like you for maintenance... must be something in the name!

I got dx of SLE, Sjogrens and APS all at the same time with Sjogrens and APS both registered as being 'primary' (Dr Hughes in 1998). My Rituximab was tried as the Sjogrens was over running my system, when it was the Lupus it was steriods added and both of them flaring cause me more issues with my APS. So my specialist team just treat the whole as one lump sum and don't get too caught up with what treatment is for what and what is responsible since it all ends up with domino effect anyway ;-) (Am on warfarin for the APS, Imurel/Imuran, Plaquenil and steriods for the Sjogrens/SLE.)

Probably hasn't helped at all with my answer!

Good luck and shout if I need to clarify my answer or you have more questions.

All the best




Hi louise

There must be something to do with our names. What your drs have said to you sounds like listens to myself(except for the sjogrens). They tell me not to worry about what is being treated with what as I cross over different things like you and treatment the same. But I don't think they realise that it is frustrating plus travel insurance and what to declare you have.

I'm on warfarin too I wonder if you would mind sharing your INR target mine is 4.0. Also low isle steroids, we seem to be a very similar drug regime.

I think I would prefer it to lower especially as they don't agree on the cause on my problems. I'm also interested to find out if there are APS patients with no other things that have had cyclo and Rituximab.

Thanks a lot for your answer and take care.



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